Real-world Evidence in Action

Wayne, NJ   |


The Life Raft Group seeks to enhance survival and quality of life for people living with GIST and other cancers through patient-powered research, education and empowerment, and global advocacy efforts.

Ruling year info


Executive Director

Ms. Sara Rothschild

Main address

155 US Highway 46 Wayne Plaza II, Suite 202

Wayne, NJ 07470 USA

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NTEE code info

Cancer (G30)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The mission of the Life Raft Group (LRG) is to enhance survival and quality of life for people living with Gastrointestinal Stromal Tumor (GIST) through patient-powered research, education and empowerment, and global advocacy efforts. The LRG vision is to champion patient-powered science and drastically increase long-term survivorship for all cancer patients. To accomplish this, we rely on four key pillars; • Leverage the patient perspective to drive innovative solutions in cancer research • Educate and empower patients to take a larger role in their care • Accelerate research outcomes through collaborative efforts • Increase access to effective treatments worldwide The LRG aims to assist the global GIST patient and caregiver community by providing tools to help them navigate their disease journey. We provide support, information and education about a rare disease called GIST. As GIST is a rare disease, there is a greater need in our community for support services such as outreach an

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

GIST Day of Learning Series

People confronted with a rare cancer like GIST have a tremendous need for information concerning the disease. The vast increase in the amount and complexity of emerging scientific knowledge makes it imperative for patients to understand their options. This is especially important since many of their physicians are not specialists and may be unaware of advancements in GIST treatment. To help address these needs, The Life Raft Group (LRG) has created the GIST Day of Learning Series, free one-day events to help patients and caregivers increase their knowledge about GIST, and to find support from others who are also battling this rare cancer. GIST Day of Learning events are an opportunity to provide the overall support, information, and resources that can empower patients, encourage advocacy, and provide hope. Over the years the Life Raft Group has expanded the number of locations hosting these one-day seminars and, in turn, we have received great feedback from our growing membership. Not only do patients and their families benefit from hearing important educational topics related to this rare disease, but they benefit from gaining support from one another and interacting with medical professionals who share cutting-edge scientific information, and describe services offered through their medical institutions.

Population(s) Served
People with diseases and illnesses

In 2008 the National Institutes of Health (NIH) launched an in-person clinic for the Pediatric GIST community, bringing together clinicians and scientific researchers from across the world to collaborate and learn more about this rare disease, and to meet with patients and their families firsthand. Through this effort a core team of multidisciplinary experts was formed who meet regularly to discuss cases that come to the clinic.

Despite the surge of knowledge researchers had gained from the NIH clinic, decreases in government funding reduced the number of in-person clinics to once per year in 2013. In response to these funding cuts, the Life Raft Group (LRG) partnered with the NIH to supplement the loss of an in-person clinic by launching the Virtual GIST Tumor Board.

The Life Raft Group Virtual GIST Tumor Board provides access to rare cancer specialists and serves as an educational resource for local treating physicians. By providing the expert medical advice needed to treat rare cancer cases, we hope that the Virtual GIST Tumor Board will continue to save the lives of patients who might not otherwise have access to the cutting-edge knowledge and clinical expertise needed to provide the best possible care.

Population(s) Served
People with diseases and illnesses

Most of us have heard the term “Personalized Medicine.” It has become somewhat of a buzzword over the last decade; especially as researchers have started unraveling the human genome and discovering much more about what makes cancer tick. Some will describe personalized medicine as finding the genetic driver of a cancer and matching a treatment to the driver. At The Life Raft Group (LRG), we believe that personalized medicine goes, or should go, far beyond this simple definition. Over the years, researchers and GIST experts have discovered and described as many as 10 different types of GIST. And yet, far too many doctors still treat all GIST patients using the same guidelines and treatment plans. This is a case of “one disease does not fit all”. Learning to be one’s own advocate is one of the most important skills that a GIST patient can master. The Life Raft Group has produced a series of webcasts and articles designed to help patients understand the issues involved with becoming their own advocate. This includes understanding GIST well enough to become an active participant in their healthcare decisions. Sample topics include:

1. Work with GIST experts from as early as possible during your treatment
2. Know your mutation
3. Optimize your care
4. Side effect management
5. Consider surgery for stable metastatic disease
6.Optimize drug compliance

Population(s) Served

Life Fest is a unique event where hundreds of patients and caregivers come together for a weekend to interact with each other and the medical and scientific communities that serve them. Faced with a rare form of cancer, GIST patients have a great need for information about this disease, particularly as the science evolves and our understanding reveals a complex set of subtypes of GIST, each responding differently to available treatments. Each year brings a wealth of new information, and patients are eager to learn about the latest treatments.

Life Fest workshops provide patients with emerging medical information, and they come away with a deeper knowledge of the disease, treatments and side effect management. They find hope in knowing the scientific community is working toward a cure, and hope is such a vital asset as they struggle day by day for survival.

Population(s) Served
People with diseases and illnesses

Understanding the role of mutations and biomarker testing in GIST/Sarcoma is one of most important things that GIST/Sarcoma patients need to learn. Knowing the driving force behind each individual’s tumors is not just important, it is critical. Despite this, biomarker testing rates are poor. If GIST/Sarcoma patients do not know their mutation type, biomarker testing is an opportunity to improve and optimize their treatment, including possibly avoiding unnecessary treatment and getting to the right treatment as early as possible.

The Life Raft Group recommends biomarker testing for all GIST/Sarcoma patients who are being considered for drug therapy if sufficient tumor material is available for the test.

The LRG has special relationships with key opinion leaders in a cancer that has already shown the benefit that targeted treatment driven by genomics can accomplish. Because of our assertive focus on the importance of testing, patients in the LRG patient registry have higher rates of biomarker testing and survival than the general population.

We have actively sought to impact the use of biomarker testing by working with key opinion leaders to lobby for changes to the College of American Pathologists (CAP) and National Comprehensive Cancer Network (NCCN) guidelines. Many medical providers and other stakeholders refer to the LRG as a model for championing biomarker testing as a best practice.

Our years of outreach and advocacy experience, and our unique partnership with physicians and researchers focused on the urgency of biomarker testing, has positioned us to provide the expertise and structure needed to support the Life Raft Group Biomarker Testing Campaign. This has included a focus on Patient Education and Awareness initiatives. We engaged with and educated GIST/Sarcoma patients about biomarker testing through a series of webcasts, patient testimonial videos and an animated video.

Population(s) Served
People with diseases and illnesses
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of volunteers

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Number of overall donors

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people

Type of Metric

Output - describing our activities and reach

Direction of Success


Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our goal is to provide support for innovative research projects, both through direct funding and by expanding our role in gathering and analyzing real-world data and real-world evidence to further GIST research, and to complement traditional lab-based and clinical trial data. This supports our mission to enhance survival and quality of life for people living with GIST by providing information without the lethal time lag that often occurs with traditional research findings.

We will expand our efforts globally and will continue to provide opportunities for medical professionals to both engage with one another and with our patient base. Many of the roadblocks we face are due to the nature of the rare disease landscape. Funding for rare disease efforts is restricted and patients face treatment challenges due to the small pool of medical experts. Researchers face challenges, as they are dealing with a smaller pool of subjects.

As a result, we need to continue to pool resources through collaborative efforts, both for funding and for expansion of the available patient cohort. These challenges require that we continually seek creative solutions, evaluating at every step, and not losing sight of our goals.

We work in four major areas to implement our strategies:

(Patient Registry - Tissue Bank - SideEQ)

We gather relevant real-world patient-provided evidence through our platforms and maintain clinical histories that are tied to tissue stored in a repository. Our side effects management tool, SideEQ, enables us to analyze data and provide tips for personalized side effects management, thereby helping patients maintain adherence to treatment. This quality-controlled data gives us the ability to share information that can impact survival and quality of life in a time-sensitive manner.

Our research has shown that educated and empowered patients have improved survival rates. We accomplish this by education, training, outreach events, and by the support provided to our patients from mentors and local leaders. These programs, publications, and efforts include Expert Patient Training , GIST Days of Learning, LifeFest, Webinars, LRG Science, Newsletter, GIST Mentors, and working collaboratively with Global and State Advocacy Leaders.

The rare cancer landscape does not provide the awareness and funding that can support widespread research efforts. Therefore, we recognized that we need to pool our resources wherever there is sufficient synergy to accomplish our goals. Our collaborators include Pediatric & SDH-Deficient GIST Consortium, Columbia Collaborative Research Project, Project Surveillance, NIH Clinic, Virtual GIST Tumor Board, GIST Research Team, Testing Initiative and working with new investigators to enhance their research

Working with other global organizations and leaders, we are actively involved in campaigns to increase patient access as well as working with individual patients to help them receive treatment. We are actively engaged in patient advocacy. We present an annual GIST Awareness Day, provide support and information to international patients and work to change pathology and treatment guidelines.

By leveraging these four pillars, we plan to accomplish our near and long-term goals. For the past 18 years, the LRG has employed these strategies that have resulted in doubling survival for our patients, dramatically increasing our global reach, impacting treatment guidelines, fostering clinical innovation, and connecting young investigators with seasoned experts to expand the GIST knowledge base. We believe these strategies will continue to be effective in the future.

The Life Raft Group employs a staff consisting of 14 full-time and 5 part-time employees. We also employ two consultants and have a dedicated Board of Directors with eleven active members. Our work is supported by x number of volunteers, including 41 state leaders and 57 Global Liaisons.

Our staff has a broad base of expertise in multiple subject matter areas that are relevant to our strategic tasks and hold a variety of academic degrees.

We are, by nature, a collaborative organization, working with pharma, academia, private industry, government and other non-profit organizations globally to achieve our goals.

For example, a partnership we developed with the National Institutes of Health (NIH) resulted in the development of an annual clinic primarily for pediatric patients with a rare subset of the disease community we serve. This, in turn, resulted in a global consortium of clinicians, researchers and patient advocates that have worked together to develop research projects and have influenced the changing of clinical diagnostic guidelines. The clinic has been replicated globally.

With an annual operating budget of $1.2 million, the LRG is supported by donations, fundraising efforts, grants and sponsorships.

As our Regional Patient Registry continues to expand into other countries, and we widen the scope of our Global Surveillance Team of medical experts, we will be able to provide expanded educational efforts, derive additional data for the development of treatment strategies, and help patients obtain access to quality medical care.

Since its inception in the year 2000, the Life Raft Group has grown from a small group of patients and caregivers gathered around our Executive Director’s kitchen table collecting patient-provided data on index cards to become the largest patient support organization and provider of real world data for patients with Gastrointestinal Stromal Tumor.

From 25 patients in its first year to a patient registry with over 2,000 members and a website reach of over 18,000 visitors per month, we have established ourselves as leading experts in the field of GIST support, advocacy and research.

• LRG’s Research Team has collectively published over 400 GIST-specific studies
• LRG’s Pediatric and SDH-Deficient GIST Consortium has influenced diagnostic treatment guidelines.
• We have influenced the direction of research and have contributed to the overall body of GIST knowledge; an early survey we conducted showed that side effects from the primary treatment for GIST often improved over time--important information that we were able to share with the pharmaceutical company that produced the drug, as well as with our patients.
• Advocacy efforts have supported legislation that impacts cancer patients both nationally and internationally (21st Century Cures Act, Ricardo Soto Law (Chile)), and has aided hundreds of patients in obtaining quality treatment.
• Our educational programs have empowered patients and caregivers. Data from our Patient Registry has shown a higher survival rate for our members, which can be correlated with their higher level of disease-specific education.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We share the feedback we received with the people we serve

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback



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The people, governance practices, and partners that make the organization tick.


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Connect with nonprofit leaders


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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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Board of directors
as of 08/03/2023
SOURCE: Self-reported by organization
Board chair

Mr. Gary Glasser

Stan Bunn

BST Global

Gary Glasser

Birch Hill Equity Partners

Jim Hughes


Teena Petersohn

Petersohn Farms

John Poss

GB Sciences

Rodrigo Salas

Cohortias and Zumanis, SAPI de CV.

Eric Biegansky


Steve Pontell

Verde, Steinberg & Pontell, LLC

Kay Stolzer

Monica Anderson

dentist, author, speaker, and podcaster

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 7/18/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.


The organization's leader identifies as:

Race & ethnicity
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

Gender identity


Sexual orientation

No data


No data

Equity strategies

Last updated: 08/03/2023

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.